When our children, Matthew and Katie, were in elementary school, I volunteered regularly in their classrooms. As a former educator, I knew that no sane teacher would turn down an extra set of experienced hands. I chaperoned field trips, helped organize classroom parties, and cleaned up after Project Graduation.
Life stayed chaotic most of the time. My husband Randy’s head coaching duties demanded extended days all year long. Matthew’s participation in sports began in kindergarten and kept going. Katie dabbled in Girl Scouts and a few recreational sports. Meanwhile, I helped my parents at the lodge our family recently had acquired.
In the midst of school and extracurricular activities, Jeffrey joined our family. Eight weeks later, we learned just how special he was with a diagnosis of SMA. At 51/2 months, Jeffrey’s stint as a member of his earth family ended.
Five and a half months.
There were no youth sports or extracurricular activities. There was no chance to volunteer in his classrooms, chaperone field trips, organize school parties, or help clean up after Project Graduation.
In their place were constant prayers, monitoring, suctioning, and thinking outside the box. With the internet, I could — and did — rely on connections to other SMA families for mental and emotional survival.
Shortly after the diagnosis, my brain sparked: Write a book! I could tell Jeffrey’s story while reminding other families they were not alone. It took a few years, but the book came to fruition. My favorite part, a special dedication honoring those living with SMA and remembering those who had passed on, provided me with untold opportunities to share Jeffrey and to learn about many others.
A few weeks after Jeffrey’s death, we joined fellow SMA families at the then-Families of SMA chapter Christmas party. Although the sting from our intense assignment was fresh, the fellowship provided an instrumental boost in the healing process. Randy worried the gathering would be depressing, but after exchanging many emails with Cindy Schaefer (mom to SMA News Today columnist Kevin Schaefer), I knew otherwise. I also expected that Cindy and I would greet each other genuinely as old friends. We did just that and laughed. A lot.
Jeffrey’s death brought relief that he was safe; it also brought glimmers of guilt. Matthew and Katie, now grown, still enjoy an abundance of love and support, which now expand to our “bonus” children and grandchildren. Jeffrey got mere months. Telling his story serves as a reconciliation of sorts, and we’ve taken advantage of several opportunities to do just that.
A few months after Jeffrey’s death, Randy and I opened The Three Bears, a bakery and sandwich shop in a bustling tourist nook. We printed information sheets about our family, Jeffrey, and SMA, and placed a “Chunk Your Change for Charity” jar on the counter for primarily SMA-related groups.
I joined a Parent-to-Parent group and met with an SMA family. I participated for three years on a panel with two other mothers who had buried their children. The students in the early education class learned about SMA and Jeffrey. As the other moms relayed their own stories, I learned that I was thankful for the assignment we’d been handed.
Several years ago, in what was a relatively calmer time for us both, Cindy and I blogged about life — and death — with SMA in “The Suite Life of Lucy and Ethel.” Unsurprisingly, most of our followers had never heard of SMA.
Families fear that their deceased children will eventually be forgotten; it’s often awkward for “outsiders” to speak about something they can’t — and would rather not — comprehend. Besides sharing Jeffrey’s story however and whenever I can, I take rare advantage of Facebook to post on his birthday and angel anniversary. I’d like to think I have something to offer in the area of encouragement, but it’s also to ensure that the memory of our sweet boy does not vanish.
SMA News Today has opened a new path for what I already love to do — telling others about our journey and the blessings of Jeffrey’s brief stay. I also hope to provide some optimism in places where it’s in short supply.
Forget? Not ever.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.